This material has been developed by and is presented by The Sandwich Generation (r)
should i quit my job???
And Stay Home and Care for Mom
by Carol Abaya, M.A.
žI donŪt believe that sacrifice always deepens affection, especially when thereŪs no option, when thereŪs no help, or when help is inadequate, or anytime when the burden is just too heavy to handle.› Love doesnŪt grow when guilt is the motivator.Ó
Tish Sommers, founder of OWL› (Older WomenŪs League) in her book› žWomen Take Care.Ó
Studies and surveys of women caregivers show that about 15% have given up their jobs to care for an aging parent, and between 25% and 40%› (depending on the survey)› have rearranged their work schedules or reduced work hours.› Another 25% to 30% have taken time off from work without pay.›
About 80% of caregiving is by family members.› žUncompensated care by the family is considered more humane and more consistent with individual needs than that provided by an institution or paid provider,Ó› Phyllis Ehrlich,› Ph.D.,› notes in her book› žIssues in Aging and EldercareÓ› (the Center for Applied Gerontology).›› Needless to say, family caregiving is most cost effective as nothing is more cost effective than no payment at all.
The Compassion Trap
Why do women provide most of the caregiving?›› Ehrlich concludes that žFeminine identity is achieved through attachment and relationship.› The emphasis on relationship represents womanŪs contribution to human development.Ó› As more woman work and have gained more žrightsÓ and self-esteem, she says that women continue to integrate human development with moral and social rights through relationships.› Women, she adds, consider it moral to care not› only› for others, but also for themselves.
Looking at societal roles, she says women žmay be more capable than men of balancing competing needs in caring relationships.› However, if they cannot resolve their dilemmas about conflicting responsibilities to multiple relationships and self, they are at risk for depression and emotional distress.Ó›
Caregiving may be rewarding and stronger relationships can be built.› But if a relationship in the past has not been žgoodÓ and the elder is confused, it› is unlikely a good relationship will materialize.› Caregiving, therefore, may be a thankless task.
Just as important is the fact that regardless of the status of the relationship (good or bad), it can be emotionally devastating to see a once dynamic parent deteriorate, become sick/frail, and žchangeÓ to someone else.
Staying home from a satisfying› job and providing 24 hour care to a confused or ill elder will only exaccerbate the emotional see-saw many Sandwich Generationers experience.
The Financial Trap
Certainly staying home to care for a frail or severely confused elderly person can be depressing.› This is an entire issue onto itself.› More importantly leaving a job can be financially devastating to the caregiver and her family.
Few beside Ehrlich are looking at these critical elements in relation to the long term welfare and financial security of the Sandwich Generationers.››
žThis unpaid labor has no value for the future in terms of financial resources or pension benefits for the woman who chooses a lifetime of caregiving.› The sporadic employment pattern of those who choose to be the caregiver lessens a womanŪs opportunity to become vested in a pension plan and ensures lower wages upon which retirement is based,Ó Ehrlich says.
žThe impact of caregiving responsibilities on earning capacities and retirement income is compounded by the large number of women who remain in occupations characterized by relatively low earnings,› few fringe benefits, and low job security.› When all has been said about gender roles and womenŪs self-image needs, the pragmatic question for all women regardless of marital status is, Will I have enough to live on in my old age?› This may be the most significant question a woman can ask.Ó
Even if a woman returns to work after a period of caregiving, she has lost time/payments into social security and her own pension fund.
This means she will have to work longer to qualify for her own retirement fund and social security.
This impact on the individual caregiver is clear.› But› it needs to be taken further, and looked at from a family, future generation, and overall societal vantage point.
Loss of a womanŪs income has a clear effect.
So the big question is:› Who is going to pay?
Note:› There are alternatives for women whose parent(s) require care, thereby enabling women to remain in the work force, yet be comfortable emotionally that the parent is being cared for.› Adult day care is fast becoming a marvelous alternative to having to leave work.
ADULT› DAY› CARE:
BEST› KEPT› SECRET
The negative impact of elder caregiving on the female caregiverŪs as well as the entire familyŪs financial well-being is critical as more people live well into their 90s.› There are more care alternatives today than ever before, and all should be considered before a žquit my jobÓ decision is made.
Senior centers and more formalized adult day care programs are marvelous alternatives - for both the aging parent and the Sandwich Generationer.› They not only provide positive oversight (especially in medical day care situations), but also much needed socialization and the bolstering of self-esteem for the elder.› They allow the caregiver to maintain a more even balance, less stressfully, in her own life.
Child care centers and nursery schools have boomed in recent decades as more and more women› work outside the home.› Women work because they want a career and to develop their own capabilities and/or to help pay household and educational expenses.› When their children are grown and leave home, these women continue to have a fulfilling lifestyle.› They are also building for their own future financial security.
For many years, society has ŽsaidŪ child day care is ŽacceptableŪ if the mother wants/has to work.› Society has also said it is acceptable to talk with colleagues and bosses about child care problems.
This has not been the case with aging parent care.› It is only now becoming more ŽacceptableŪ to even discuss often sensitive issues.› Caregivers often are overwhelmed by their multi-generational responsibilities, and as many as 50% report experiencing burnout.›› Higher percentages of caregivers report stress that negatively impacts work and family relationships.›
Given the countryŪs demographics, adult day care is now the fastest growing component of community-based programs that help seniors stay at home longer and out of institutions. There are more than 4,500 adult day care centers, devoted to those who cannot or should not be left at home alone.› (This excludes senior centers.)
What They Are
Adult day care centers are community-based, group programs for adults experiencing a decrease in physical, mental and social functioning.› The adult day care environment recognizes and deals with emotional and intellectual needs as well as physical disabilities in a protective setting.
Adult day care centers have many of the same objectives as child day care:
In addition, adult centers
As programs geared toward older adults are often developed by local community, churches or other civic organizations, adult day care centers are sometimes confused with multi-purpose senior citizens centers.› Senior citizens centers generally are geared to those who function at a higher level.››
But even these often cater to seniors with some physical and mental impairments. In the adult day care category›› there is a difference between› social› and› Žmedical,Ū each offering a different level of care.
While many of the activities are similar, the level of sophistication differs and staff/professional help is› tailored to the physical and mental capabilities of attendees.››› Activities can include all or some of the following:› recreational activities and therapies, meals, social services, transportation, personal care, nursing services, rehab therapy (speech, physical and occupational) and medical services.
Priscilla Loughner, a director of a social senior center for almost 20 years says, žSocialization is an important element in everyoneŪs life,Ó she says.› žHere seniors have a normal, stable setting.› For those who are becoming confused, a regular routine is very good.› They get up in the morning, get dressed and out of the house.› The program gives participants an alternative to sitting home alone sleeping in front of a television all day.› We help eliminate› feelings of isolation that can be so devastating to anyone.Ó
Attendees receive meals, exercise programs for the more physically fit, and there is an active recreation program involving arts and crafts, speakers and trips to area shopping malls.
Loughner also notes that personal care› habits remain at a higher level because of their getting out of the house. ›And in cases where there are problems, often staff, because they are not the attendeeŪs child, can initiate change with better results.› She recalls one case where a woman refused to have her hair washed.› Loughner was going to the hair dresser herself and suggested the senior join her.› The senior did and had her hair washed.› Then she went regularly -- an activity that made her feel better about herself.
Another area of concern with the elderly is nutrition.› žThose in early stages of dementia or AlzheimerŪs often forget many of the basics -- how to make a sandwich, for example, or whether or not they have eaten.› Loughner recalls a situation where the adult child left a whole loaf of bread out for her mother to make a sandwich and came home to find the whole loaf gone.› Her mother had not remembered that she had already eaten just a short time ago.
Adult Day Care
The fastest growth is seen in the adult day care arena for seniors who should not be left alone either in their own home or a childŪs because of safety and medical reasons.› Wandering off, medicine schedules, eating on a regular basis, substantial confusion›› may be problems. Often severe incontinency problems are the reason an elder needs to move out of the senior center environment into an adult day care one.›› Regardless of the extent of need, there are numerous and very substantive benefits to having a parent attend an adult day care program, whether social or medical.
Sister John Miller is director of six centers in St. Louis, MO.› The first opened› in 1981.› The St. Elizabeth centers are open 6 a.m. to 6 p.m. to allow caregivers time to get to and from work.› They are also open on weekends and even offer overnight elder care.
Sister Miller emphasizes the social aspects of day care.› žIt provides the opportunity for seniors to have a social life apart from their family in a safe environment.› It allows them to interact with others their own age, with no outside expectations placed on them.Ó› In cases of AlzheimerŪs, she says that often attendees stabilize and show some improvement because they have a safe routine and receive meals and medicine on time.
She says that attendees have a better sense of self security, and agrees with Loughner that they are often more comfortable getting help from someone other than a family member.› She says attendees can express themselves as best they can and they are more comfortable doing this with non-family members.› They are able to maintain their own personality and independence, she notes.
Rachelle Bloch is director of two centers in Santa Clarita, CA, which are both social and medical.› She also points to the social aspects as being of first importance.› žAttendees receive marvelous cognitive stimulation.› They establish new friendships and develop new relationships.› Attendance also affords them the opportunity to be away from the home, if they live with children, and the commotion of that environment when there are young children around.Ó
Bloch points out that adult day care enables seniors to be independent longer, and stay at home or with the family rather than be in a more institutional setting.› Because activities are geared to capabilities, she says, žSeniors self esteem remains higher because they achieve success with the activities.› And there is a connectiveness, a sense of belonging.Ó
One of the most important ŽsupportŪ mechanisms is emotional.› Seniors who have had to give up driving and their homes are aware of what they have lost.› The feelings of hopelessness and depression can set in.› But these feelings also flow over and affect the other members of the family.› The reverse also applies.› If the senior is active and happy, enjoying life again, these positive feelings also overflow to the other members of the family.
More long-term insurance policies have provisions for adult day or at home care, but few health insurance policies, HMOs, or employee benefit programs cover these costs.
In the case of› senior centers -- as opposed to adult day care which are generally regulated by the state --› most are run and financed by the community, and there is generally no fee for a person to attend.›› Attendees may be asked to pay a nominal amount for lunch and sometimes for transportation.› .
For adult day care, whether social or certified medical, the family most often bears the cost.›››› The average cost of adult day care ranges from $40 to $60 a day. In some areas of the country, it can be as much as $100 a day. Some day care centers are now instituting sliding fees, depending on the exact kind of services/help needed.› Others have a sliding fee dependent on income and assets.
The cost of adult day care centers compares with $30,000 to $45,000 a year for in-home services (including actual paid, but also unpaid care).› Nursing homes costs vary greatly and can range from $45,000 to over $100,000 a year.››› Residential and assisted living facilities are somewhat less expensive than nursing homes.
The benefits of adult day care, whether just social or medical, are tremendous when it comes to improving everyoneŪs quality of life.› Just as child care has emerged from the shadows, so will adult care in the future.
Peace› of› Mind
Keeping an elder at home all day and staying home to watch over and care for that elder can place an enormous toll on the caregiver and the rest of the family.› A large proportion of caregivers report health and stress problems of their own, as well as depression and feelings of frustration.
The financial benefits to the caregiver and the emotional benefits to the elder of adult day care have been discussed.› The emotional aspects for the caregiver are just as important an element in seeking help in caring for a parent. And whether the care is at a senior center or adult day care one, the results are the same.
Priscilla Loughner, former director of the Howell, NJ, senior center, says, žCaregivers can go to work being assured their parent is being cared for.› No one can tolerate being a caregiver 24 hours a day.› It is hard to take emotionally if the elder is in žanother worldÓ or is paranoid.› ItŪs hard to take when the parent keeps saying he/she wants to go home, when he is really at home.› Or at least in the current home.› ItŪs also difficult for everyone, especially younger children, if the elder accuses someone of stealing a possession.› Many times, the elder has really forgotten where she put the item -- or hasnŪt had it for years.› Such situations can end up with the caregiver becoming ill herself and children becoming resentful.Ó
Rachelle Bloch, director of the Santa Clarita, CA, Adult Day Health Care Center, says adult day care enables elders to remain in the community, surrounded by family and friends, longer.› žItŪs a relief to the family that they donŪt have to place a parent in a nursing home,Ó she says.
Bloch also notes that working caregivers experience a sense of security knowing the parent is in a safe place.› BlochŪs program, like many others, provides individual counseling for both the caregivers and elders and has support groups.› With these services, caregivers can receive much needed emotional support.
Sister John Miller, director of the St. Elizabeth Adult Day Care Centers in St. Louis, MO, echoes Loughner and Bloch.› žCaregivers can go to work without worrying about whether or not the parent is eating or taking medicine on time, might burn the house down or have an accident.› Caregivers have peace of mind, knowing where a parent is and that he/she is safe.Ó
Sister Miller also says adult day care helps remove the familyŪs guilt feelings if the only other alternate would be a nursing home.
Selecting a Day Care Center
One of the most important considerations when selecting a facility is matching the level of services provided to the amount of care required.
Even if a parent is reluctant to attend, try it out for a week or two.› It often takes awhile for an older person to adjust and accept a new environment.
Services & Peace of Mind
Independence and ždoing things my wayÓ are among the most important words in a personŪs vocabulary.› They are critical to oneŪs self esteem and žIÓ Self.
With those in the 85+ age group growing faster than any other population sector, these words have special significance.› As people live longer, they inevitably need some kind of help with daily chores and/or personal care in order to remain in their own home.
The situation is not helped by the geographic dispersement of family members who might help and the fact that more than 60% of women today work outside of the home.› Scenarios are further complicated by the wide range of services that might be needed, and the variety of people/companies offering services.
Into such scenarios steps the geriatric care manager.› A geriatric care manager is a professional who specializes in assisting older people and their families with long term care arrangements, usually designed to help the elder remain in his/her own home as long as possible.›
The objective of elder care, whether long distance or around the corner, is to maximize the independence and autonomy of the elder.› The highest quality and most cost-effective health and human services should be sought.›
A key objective is to reduce inappropriate and costly institutional care.
Who They Are
Often a social worker or registered nurse experienced in dealing with older people, geriatric care managers can do as much or as little as the situation warrants and the family desires.› They can act as a surrogate family member when elders are alone or far away or they can simply provide informational and emotional support to a Sandwich Generationer who cares for a parent at home.›
They are dedicated to the advancement of dignified care for elders and providing peace of mind for family member, regardless of whether they live 10 or 1,000 miles away.
Depending on the individual GCM or the agency, services may include any or all of the following:
Planning for the care of an aging person must be multi-faceted with all elements consistent with each other.› In order to ensure this is accomplished, a number of elements should be looked at before hiring a GCM and later in evaluating the services.
A professional geriatric care manager should
Why Bring In A Professional?
Scenario 1:› Dad passed away last month.› Mom lives alone and has lost weight.› She doesnŪt drive, and the closest supermarket is two miles away.
The Sandwich Generationer lives 200 miles away and wants to hire someone to help Mom with shopping; take her to the doctor, to visit friends and the mall.› Mom refuses all help, and tempers begin to flare.
Scenario 2:› Dad fell, broke his hip and required hip replacement surgery.› He has to have physical therapy and will go into a nursing home for several weeks.› Mom, who has vision problems, is home alone.› She also cannot do the shopping, cooking, laundry or cleaning.› Help is needed.
The Sandwich Generationer only lives 10 miles away, but has a full time job which requires a considerable amount of travel around the state.› She needs to continue to work to pay for her childrenŪs college education.› She has a teenage daughter who is having difficulties in school with several courses.› Her husband also has a high pressure job.
In highly emotional situations, such as in Scenario 1, as well as in the crisis situations, such as Scenario 2, bringing in a professional geriatric care manager can help ensure appropriate help is provided› --› in a non-threatening way.
žA care manager lends objectivity to a situation,Ó says Grace Lebow, co-founder of Aging Network Services in Bethesda, MD.›
In Scenario 1, LebowŪs observations: A stalemate has ensued as both generations feel stuck and angry.› The care manager can work with mom in a professional manner without the emotional buttons that get pushed with family.
For example, if Mom is losing a lot of weight, the care manager might coordinate and participate in a meeting with the doctor who will prescribe (on his prescription pad) an 8 hour day caregiver to prepare meals.› The care manager will find and supervise the caregiver.
Rona Bartelstone, LCSW, BCD, is past president of the National Association of Professional Geriatric Care Managers.› She› says, žGetting older parents to accept these services is often a job in itself.
žTodayŪs elderly are the last of the folks who lived through the Depression as adults.› Their mind is set about not airing their dirty laundry.› We have to find a culturally consistent, acceptable reason for them to let us walk in the door.Ó
In Scenario 2, a number of different services are needed immediately and others will be needed when Dad returns home.
Lebow adds, žOften families are unfamiliar with support services, such as day care, senior centers, home delivered meals and groceries, medical equipment, home health aides.› A GCM not only knows where to find these services, but can select those most suited to the particular situation.Ó
Joyce Deane, RN, has a Masters degree in science and community health administration, and is a NJ certified geriatric case manager.
žA GCM can help a family ensure quality care for an aging relative cost effectively and provide new opportunities for the elder who wishes to remain at home,Ó Deane says.› žOptions are particularly important when Sandwich Generationers do not live nearby and do not know the community resources available.› Nor can they objectively assess needs.
žA professional can do an assessment that is honest, open and subjective.› Personal familial feelings do not get in the way.› Often a stranger can develop a more positive and trusting rapport, especially when previous family relationships and feelings have not been good.› A GCM can help open up a dialogue, two-way communications, and find out the elderŪs real reasons, for example, for resisting help,Ó Deane says
Deane also notes that a professional GCM should get the elderŪs opinions on values, likes and dislikes, and should not base a care plan on the GCMŪs own values.
Consistency of care and services helps maintain quality of life and independence.› A GCM can help provide that consistency.› The initial assessment, planning, on-going re-evaluation and monitoring will be consistent.› Services coordination and quality assurance can be better accomplished by one person.
Just as important as helping families obtain the services needed to maintain an elderŪs independence and ensure a decent quality of life are the emotional issues of both aging itself, acceptance of outside help and elder/Sandwich Generation relationships.
Bartelstone notes, žOur eldest generation is very private, and parents may not have told adult children about failing health or have discussed their feelings of loss.Ó› This can be true, she says, regardless of how close to or far away they live from each other› A sensitive GCM can help families deal with these situations.
Deane adds, žBringing in a professional can help elders and families maximize options in relation to appropriate help given the elderŪs needs.› However, any competent person can refuse help and may not allow a stranger in.› At times, it takes a crisis for the elder to agree.Ó
Deane says that resistance to help, especially from another family member, may be the result of past poor relations.› The adult child should open up a new dialogue to try to find out why the parent is resistant.› Questions that elicit the elderŪs opinions and feelings should be asked.› Then help, according to the receiverŪs values and not the Sandwich GenerationerŪs, is more likely to be accepted.
Deane, Bartelstone and Lebow all agree that the elder must agree to and cooperate with the GCM if services are to be effective.› Even when the elder is confused, he/she needs to participate in deciding what help will be given and by whom.
žLook at the personŪs functioning ability,Ó says Deane, žand get minimal help rather than have someone else take over completely.› Then as needs change, more help can be provided.Ó
Often, Deane notes, those with early dementia are more resistance because they donŪt see and canŪt accept their incapacity.› žThe objective always is to help a person do as much as possible for himself, and provide help only where really needed,Ó Deane advises.
Any caregiver must be attuned to the elderŪs values and be able to communicate in such a way that ties in with these values as well as the elderŪs personality.› These elements become critical when hiring someone else to provide care.
žPersonalities must jell,Ó Deane notes.› žHow does the GCM or other provider present herself?› What is the personŪs style?› Some people are too direct, can be overbearing.› This may not be good for the elder.Ó
In order to determine žstyleÓ and method of handling situations, Deane suggests doing a žWhat if...Ó interview.› žIf __________ happened, what would you do?Ó› žSee if the GCMŪs approach is acceptable to you, as well as to the elder,Ó she says.
Also, ask questions to determine their opinion about the use of behavioral modification drugs as well as other medications.› žMedicine oversight is an important element,Ó Deane says.
Another area to look at before hiring a GCM, especially if she will be hiring and supervising others, is that other service provider.› Interview everyone the GCM recommends and only hire those who can interact positively with the elder.
While States do not license GCMs, there are various professional organizations that screen potential members and have certain professional criteria for membership.› Also, a number of hospitals and colleges offer gerontology certificate programs.› If a GCM has such a certificate or is a member of an organization with criteria for membership, he/she has some background in the field.
Hiring the right GCM and service providers is very important.› Research has shown that the mindsets of the chronically ill and aged determine interaction with the caregiver approach.› It clearly shows that the older personŪs mind-set or attitude toward life, self, self care and caregivers, affects the ability to live independently, despite chronic illness.› At the same time, the caregiverŪs mind-set and the receiverŪs interaction can result in positive or negative scenarios depending on the caregiverŪs attitude and approach.
GCMs charge a fee for services provided.› The fees vary as much as the services, and are not reimbursed by Medicare or other health insurance.› Before retaining a GCM, ask for, in writing, the fee schedule.› Also ask for a letter specifying what services will be provided, at what cost.
Aging Network ServicesŪ Lebow suggests that bills be sent to the person paying them rather than the elder.› žNo matter the financial ability of the older person, it is upsetting for them to see the bill.› It is best that the elder not be burdened emotionally by seeing the bill.Ó
To find out more about a GCM and state regulations, call the National Association of Professional Geriatric Care Managers at 1-520-881-8008.
This material is copyrighted by Carol Abaya Associates and cannot be reproduced in any manner, print, or electronically.